Last night and this morning we talked about baby steps. Gradual, forward progress. She might be taking baby steps in those cute blue socks, but boy does this seem like a giant leap forward!
She’s exhausted and still hasn’t been able to sleep well. The NG tube they put through her nose and into her stomach is pretty uncomfortable. They want her to keep that in for at least a couple of days until they feel she is safe to swallow. Knowing Erika she’ll talk her doctors into pulling that out early too.
The other thing they are working on today is weaning down her oxygen. She’s been doing well after moving her from the high pressure oxygen to the nasal cannula, but they will likely give her the high pressure oxygen and maybe the bipap at night to help her fully expand her lungs while she is sleeping.
Other than the discomfort of her NG tube, her pain and anxiety both have become a little more manageable. She does keep saying how it feels “weird” to take deep breathes. Her medical team tells her this is normal. It’s not surprising that after living with cystic fibrosis lungs for her entire life and after years of being physically incapable of taking deep breaths, that the concept and the act of filling her lungs would seem so foreign. (The things we take for granted every second of every day). *We are so thankful for the donor and continue to think about their family during this time. We would not be where we are right now without the tremendous loss and grief of another family*
Even after her bumps in the road and while feeling VERY tired, she’s trying so unbelievably hard. She told the team she’d run if they needed her to and that she’d do whatever they asked of her. She’s so motivated to be healthy and strong.
Today was a good day.